Mum-of-four Mandy Duguid , 33, of Clydach , was left devastated by the death of her Uncle William from motor neurone disease
A family from Wales have lost five family members to the same muscle-wasting disease, but are refocusing their grief into an effort to fund medical research to combat it.
Mum-of-four Mandy Duguid, 33, of Clydach, was left devastated by the death of her uncle William from motor neurone disease.
Her uncle’s death is the fifth that the disorder is believed to be responsible for.
Mandy admitted to feeling engulfed by a sense of helplessness after yet another death. But she and her remaining family are now launching a fundraising drive to help research the condition.
‘The worry is it will come down another generation’
A faulty gene in the family is responsible for the presence of the disorder, which is typically very rare.
Motor neurone disease affects the cells and nerves in the brain and spinal cord, which control the muscles in the body.
It gets gradually worse and can make moving around, swallowing and breathing increasingly difficult.
Life expectancy can be considerably shortened, but others live with it for many years and rely on treatments which can lessen the impact on their daily lives.
Cynthia Thomas, left, and Rose Abberley, right, both died from the disease.
The rare inherited form of motor neurone disease, which is sometimes known as familial MND, affects between five and 10 per cent of people.
Duguid has deliberately tried to avoid finding out if their genes will lead to any more of her family being struck down. She and her family have already been through the agony of the loss of Mrs Duguid’s mum’s auntie.
Cynthia Thomas, her great uncle and grandmother’s brother Robert Abberley, her grandmother Joyce Evans, and her uncle William Evans.
And a fifth member of her family – her late great grandmother Rose Abberley – was also suspected of having the disease.
But Mrs Duguid said the family were now determined to turn their grief into finding a cure for motor neurone disease.
She said: ‘It’s heartbreaking, it’s hard as I felt helpless as you know what’s coming.
‘The worry is it will come down another generation.
‘In our family it is caused by a faulty gene, there are other families who have been in the same situation as us.
‘When my mother’s brother William Evans died last April, it affected me the most. He was 55.
‘I remember my Uncle Bob having a machine to speak like Stephen Hawking – he deteriorated quite quickly.’
Combating the deadly disease
Her uncle John Evans, of Tycoch, is preparing to take part in a series of fundraisers in a bid to raise cash towards research into the condition.
He has been inspired to run the Marathon Des Sables 2018 – a 156 mile trek across the Sahara Desert over six days between April 6 and April 16 – for the Motor Neurone Disease Association.
Mr Evans and the rest of the family are also hosting a charity night at the Bay View Hotel on March 16 at 7pm, which will include performances from
Joe Schmo and the band, along with raffles on the night.
Pictured left: Robert Abberley, who died of motor neurone disease. On the right: John Evans, who is running in memory of all his family members who died of motor neurone disease
Pictured: William Evans who died of motor neurone disease – one of five of the same family
Pictured: Joyce Evans, who is one of five members of the same family to die of motor neurone disease
He has already raised between £20,000 and £25,000 over the last four or five years through his fundraising efforts.
Mrs Duguid added: ‘Because of the gene we think it will be us next, with there being no cure you don’t want to know.
‘But if there is a cure you want to raise as much money as possible.’